Friends

What does a friend mean to you?  Look at the person in this picture.  Soft brown eyes, mischievous smile, a go getter look on her face.  She is a mother.  A fun mom who gets on the level of her teen, a daughter that counts on her and loves her so. Shawna has Pulmonary Fibrosis.  She loves laughing, helping her friends smile, her baby dogs, her beautiful daughter, music, the beach, crocheting, geeking out and life.

Since my husband was diagnosed with this disease at age 49 and passed away from it in 2011, I know this is nothing to play with.  There are many (as many as breast cancer) that pass away from it every year in the United States.  Health care is difficult, even when there is is cure, because of finances many cannot afford to live.  In this case, the only cure, and it is not guaranteed, is a lung transplant.

I have been blessed to know Shawna, and now, she has made the huge decision to pursue this operation.  It takes a lot.  Bravery, Acceptance, Flexibility, and Finance.  Let's not forget Hope.  Can you imagine, putting your whole life out there for everyone to see, with the hopes of raising some money just so you can, live, Breathe?
https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR3VyHnYdxrxNbvoyeqSkv_wGFyGjPHqF3q9SLfY-2ACRuUlXFtvdACo9e8https://www.gofundme.com/shawna-fetterolf-medical-fund?fbclid=IwAR1_RaAIb2INj5-0-ag769y6DJjxN47YG5bF_ju7P880cSItd4aAQEzoPn8

Pulmonary Fibrosis Patient and Caregiver Map

If you or someone you love has Pulmonary Fibrosis, you may have felt somewhat isolated as this is considered a rare-disease. A map has been formed to help assist in connecting both patients and caregivers, alike. Please check out this valuable tool.  ~Breathing  

to go there directly, click   https://www.google.com/maps/d/viewer?mid=zW_u6xjtaZtI.k2cqDBhhYmqs

Keep On Keeping On! ~Written By: Denise Queen-Sackinger

On this day, 7 years ago I underwent an open lung biopsy because a pulmonologist assigned to me a month earlier while I was in the hospital with double pneumonia didn't like what he saw on my x-rays. And the rest, as they say, is history!

Like most diagnosed with this mess, I had been seeing my PC doc for over 2 years about a chronic cough. Like most, I had never heard of IPF. Like most, I was scared out of my mind when I got the results of the biopsy. But here I am, 7 years and still stable. I sleep with O2 and use it with exertion. I had to quit working 2-1/2 years ago due to the high stress job and the bone degeneration caused by Prednisone. But, I've beat the statistical odds and for that, I am grateful. My 1st grand daughter was 3 days old on this day 7 years ago. I was sure I would not see her walk, much less be the young gymnast she is. I went to her 7th birthday party this past Saturday and best of all, I have 3 more grand daughters; her baby sister and her 2 cousins. I am blessed.

It's not lost on me that September is the month I was diagnosed and it is PF Awareness month. The year after I found out about this disease there was a PF Awareness WEEK. We are making progress! I've met some great people on FB the past 7 years. I've made life-long friends; most I'll never meet. I've lost far too many. If you have the energy to be an active advocate for PF, I applaud you. If you are at a point where you can only tell one person, one PF fact, I applaud you. Love, peace and happiness.  

“Keep on Keeping On!"  Written By:  Denise Queen-Sackinger

**Thank You Denise, for allowing me to share your experience.  You're spirit is amazing and may you have many more blessings to come!  ~Breathing

5 Ways to Help the Caregiver In Your Life Written By: Ann Napoletan

Article Via; Caregiver's Blog 

Written By: Ann Napoletan

If you think you are too small to make a difference, try sleeping with a mosquito.  ~His Holiness, the 14th Dalai Lama

It’s true – there are those who insist one person can’t make a difference in this world. However, having recently been through an extremely difficult time, I have to respectfully disagree. In fact, I can say with complete confidence that each one of us holds the power to do wonderful, often simple things that can categorically change the course of another human being’s day.

If you have ever tried to extend a helping hand to a caregiver, you’ve likely found that they have a very hard time accepting assistance. Nurturers by nature, they’re used to offering support, but really struggle when they find themselves on the receiving end. Most caregivers don’t want to be a bother or appear the least bit needy, so even when people willingly offer, they have a natural tendency to smile and politely decline.

That doesn’t mean you should stop trying. Here are 5 simple things you can do to bring a smile to the face of the caregiver in your life.

• Wintertime is perfect for sharing comfort food. Just about anyone would welcome a crock pot of hearty soup or a steaming hot casserole. These things not only make for a wonderful dinner, but will likely provide enough for a few lunches as well. Other ideas: Next time you’re cooking a meal, double the recipe and deliver the extra portions to your friend with reheating instructions. Don’t cook? How about sending a gift card for a favorite local eatery?  Be sure to take any special dietary needs into consideration.

• Would your favorite caregiver enjoy a relaxing massage? Consider going in with a friend to purchase a gift certificate, and present it along with a “coupon” offering to provide respite care while she enjoys an hour or so of pampering.

• Is your caregiver friend a member of the ever-growing sandwich generation? If so, make a play date with her kids. Perhaps you can pick them up from school for a movie and dinner, or how about a Friday or Saturday night slumber party with pizza, popcorn, and board games?

• No matter the season, most caregivers could use a little help around the house. Some ideas include shoveling snow, raking leaves, trimming, or mowing the lawn.  Have you heard your friend mention any household “fix it” jobs that are screaming for attention? Maybe you and a few others can pitch in and hire a handyman service for an afternoon.

• It doesn’t get much easier than this! Next time you’re out, simply pick up a heartfelt greeting card. Write a personal note inside and put it in the mail. Everyone loves finding a card in the mailbox; knowing that someone is thinking about you during a difficult time can make all the difference in the world.

These are just a few things you can do for the caregiver in your life; there are lots of other ideas. Remind them to take care of themselves. Get creative! Bring them a new journal, a pretty indoor plant, or just a good cup of coffee and their favorite indulgent dessert. Not only will it make someone smile to know you care, but you’ll be fulfilling a need they may not have realized they had. Most importantly, never underestimate the power of a kind word or caring gesture, no matter how simple. I promise it will make a difference.

5 Things Every Person Living with a rare disease understands ~Written By: Rachel Wilson

5 Things Every Person Living with a Rare Disease Understands

Most people have heard the term “rare disease” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When it comes to rare diseases, including rare pituitary diseases like Cushing’s disease and acromegaly, what’s truly rare is the kind of public awareness and understanding that people with a rare disease truly deserve.

Rare Disease Day, which falls on February 28, aims to spread awareness about these conditions and the impact they have on patients’ lives.

How rare is “rare?” On one hand, people with a specific rare disease are statistically few and far between – in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. In the UK, a disease is considered rare if it affects fewer than 50,000. On the other hand, there are over 6,800 such diseases, according to the U.S. National Institutes of Health (NIH), so for something considered “rare” there sure are a lot of them.

In support of the rare disease community, Novartis will be launching an educational initiative called “A Day in My Shoes” which aims to tell the stories of people living with acromegaly. We spoke to several individuals for this post, and, as part of this effort to educate, they shared five things almost every person living with a rare diseases knows:

1. Getting properly diagnosed is one of the biggest challenges. Rare diseases are so rare that the symptoms are often misunderstood and as a result, people with rare diseases often spend years trying to get properly diagnosed. In the case of acromegaly, getting a correct diagnosis can take anywhere from six to 10 years and for Cushing’s disease, it can take about six years on average. By the time they’re diagnosed, many patients are just relieved just to put a name to their symptoms.
2. Your friends may know about your diagnosis, but only a few gems will really get what a chronic illness is or what it means. Many people are so uninformed about rare diseases that they expect your rare disease to clear up like a lingering flu. Blogger Rachel Wilson has Cushing’s disease, an endocrine disorder caused by a noncancerous pituitary tumor which ultimately leads to excess cortisol in the body. “There’s not a lot of empathy,” she notes. “Even some people that know me kind of get annoyed. ‘You’re sick again?’ or ‘What do you mean you can’t walk with us? But you walked last week!’”
3. You choose whom to tell very, very carefully. Most people living with rare diseases agree that once a diagnosis is public knowledge, people treat you differently. “I want them to know I have serious health issues but… I don’t want people to look at me like I’m disabled,” Rachel explains. There’s a paradox that patients face – wanting to tell but knowing that the people they tell are likely not to truly understand without a lot of effort on their part to explain…and then still, they probably won’t get it like they do with more widely known diseases such as cancer or multiple sclerosis.
4. Rare disease patients often play a large role in educating their doctors. Rare diseases aren’t just rare to the general public, they’re often rare to the physicians who treat them, even specialists. You’ve tried what seems like every available treatment, read medical journals, and done your own research. With all this, plus just living with the condition, you are the world’s foremost expert on how your rare disease affects you.
5. People will try to cure you. Not just your doctors. Everyone. Your Aunt Sally swears by a green smoothie and its healing properties. Your son’s third grade teacher has these supplements you simply have to try. “Everyone knows everything about anything,” is how Rachel puts it. “People like to diagnose you, or treat you, or, since they heard about this on a TV show, they know it’s not as bad as you make it out to be.” Many rare disease patients feel that people equate “rare” to “not really understood by the medical community.”

And while some of these realities for people living with a rare disease may indicate that they want both privacy and just to be treated like everyone else, most are strong advocates for public education efforts. Cushingstories.com co-founder Rae Collins notes, “Educating was key. To help others understand the disease, for me to understand it more, to help doctors even understand what I was going through. The more people who understood in my life, the better it became to me.”

Check out Novartis’ The Voices of Acromegaly and Voices of Cushing’s disease, a three-part video series that feature advocates, caregivers and people living with rare diseases on the Novartis Rare Disease YouTube Playlist.

For additional information on rare diseases and Rare Disease Day, visit Rare Diseases: More Common Than You Think? or the Rare Disease Day 2015 website.

via;  http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands

~~~A Pulmonary Fibrosis Merry Christmas~~~

Merry Christmas to You~ 

The One with Pulmonary Fibrosis fighting each day to live a life fulfilled.  

The Caregiver, tirelessly assisting and supporting your loved one.  

The Child, holding the hand of your loved one and letting them hear your laughter.  

The Friend, who offers a shoulder to lean on and an ear to listen.  

The Bereaved,  bravely taking one step at a time forward, living to honor the spirit of their loved one.  

The Doctor or Nurse, trying their best to understand and treat the symptoms.  

The Researcher, searching to discover more about the causes and cure. 

The Advocate, creatively seeking to spread the word about Pulmonary Fibrosis.  

We All make a beautiful team, a family.  

To You~ My Pulmonary Fibrosis Family may you experience the magical love of this season 

in the most profound way.  

Many more treasured memories with each day of the New Year.  

~Breathing

Check Your Status~ Single? Married? Or, It's Complicated Grief?

If your like me and not sure which status to check, I found an interesting article that may add some helpful insight. ~Breathing

http://www.mayoclinic.org/diseases-conditions/complicated-grief/basics/definition/con-20032765

It's The Simple Things That Are Important~ Written By: Christy Mccullough

Five years....five years that my life was changed forever. The day I was told and crying coming out of that office and not even knowing what exactly it was I had but knew I would have to have a lung biopsy. How could this be happening to me? What would my life be like? So many things running through my head and not knowing where to turn. I didn't even know what Interstitial Lung Disease was and what life was going to become. It took me until after the New Year to even realize what was happening and longer to tell family how bad it was. 

I went through stages of denial, grief, anger. The thought of never seeing my children graduate, not being there to help my daughter pick a wedding gown, never seeing my grandchildren. Why was this happening to me? I thought my life was over. My children, family, and friends would watch me die slowly and there was nothing I could do. But I was wrong. I was not raised to give up and I have been through many things that I came out of and I would keep fighting not for me, but for my kids. To know that mama doesn't give up and show them you keep fighting no matter what. 

Days are not always easy. I gained weight from meds and lost my self confidence of not just as a person but as also being a woman. I can no longer breathe as easy and do things like I could. I don't like asking for help, never have. And hate when I can no longer do things as I could before without having to stop cause I can't breathe. I would never be the same person as I once was. 

I found support though with family and friends and also support groups in which those people have now become like family.  I can't say that it's not hard as it was but I have come to terms that one day my time will come. We all leave this world one day but somehow it's different when you know that you only have so long and there's nothing you can do about it. The one thing you do know is that you live. Live everyday. It's funny that at times I forget that I'm sick and have a moment like why am I coughing so much and remember~ oh yeah "lol"! Five years of coughing so hard you break your ribs, Five years of changing how you do things, five years to learn that it's the simple things that are important. 

So many people take for granted the little things, little things as just being able to breathe. Be grateful for the little things and never take life for granted. I have made the five year mark and plan on fighting till the end. I thank God for giving me the chance to wake up and try again everyday. I thank God for the family and friends who love me and give me the strength I need at times and a husband who has done more than support me in every way everyday.

**Thank You, Christy for allowing me to share your thoughts and to help lend hope for those diagnosed with Pulmonary Fibrosis to know that it is a learning process and perhaps, somewhere within that process is a deeper understanding of the things that are truly valuable in our lives.**  

~~~Breathing~~~

Pulmonary Fibrosis and Panic Attacks

Over the years, I have heard many people with Pulmonary Fibrosis mention that they experience severe panic attacks.  It seems understandable that this would occur because many have difficulty breathing as part of their illness.  When I Google or look up panic attacks, many of the writings are geared toward people who generally have these experiences, but I cannot find much in writing or resources that specifically deal with this occurring while on oxygen and having a terminal illness.  

Though panic attacks can be severely debilitating, it seems that much of the literature indicates to face the fears you have and realize that the percentage of them actually coming true is very low.  With Pulmonary Fibrosis, I think this does not apply, as often the source of the panic has to do with the fear of not getting enough air, which is a very real scenario to PF patients.

I remember my husband experiencing quite a few of these attacks.  Some where quite severe.  He would flail his arms in desperation of getting more O2, but in reality, he was pulling the O2 out of his nose and knocking down canisters.  Another time he was so desperate for more air, that although he had a portable O2 container turned on and in his noes, that he picked up the portable and began trying to suck air out of the handle itself.  It was very heartbreaking to see.

As a caregiver going through this with him, I had to learn to keep calm and be very deliberate in my voice and actions.  No rushing, although he was in panic mode, I could not allow myself to rush about the room. Why?  If his surroundings were chaotic during these episodes, it only made the situation worse. If he could not be calm, then I had to for the both of us.  

Touching him during this time had to be thought out.  Rather than rubbing his back, I would place my palm flat on his back and hold it still.  Everything had to come down a notch, including my voice.  Speaking in a low, soft tone can be more helpful rather than an elevated voice.    

Helping him to focus assisted in bringing down the heightened nature of a panic attack.  If he was scared he didn't have enough air, I would put the pulse-oximeter onto his finger for both of us to check it.  Getting him to look at it helped gain focus.  If his SAT's were low, I turned up his O2 and gently let him know they will start rising soon.  Let's watch them rise together.  

These attacks sometimes came during a coughing episode, or would bring a coughing episode on.  By the time they passed, all of his energy was spent.  It took so much out of him to go through this.  I wanted to minimize this happening and looked at the different scenarios in which they occurred in the past.  I tried to notice patterns.

I noticed that many of them occurred before his showers.  Showering becomes a difficult task for someone with PF.  The moisture and steam in the air, the use of your arms to lather, the slipperiness of the tub, the water on the floor, the energy used to dry off, all become monumental.  There was no such thing as a quick shower anymore.  Understanding that and blocking out an appropriate amount of time eased the task.  As a caregiver, making sure everything was ready for him also helped.

We were provided a slew of drugs while he was on hospice. One of them was a liquid dose of Larazapam.  This was specifically provided to ease anxiety.  In this form, it did help but was something that worked in only the short-term and the dose might be given several times a day, depending on what kind of a day he was having.  At first, when all this was new to us, we administered a dose during his panic attacks as a way to help him calm down.  As time passed and we recognized the patterns of his panic attacks, we realized that the best time for him to take this was prior to his shower.  Before he felt the anxiety.

Everything we did had to do with preventing them in the first place.  Thinking ahead of any given situation, allowing the proper amount of time and preparing in advance seemed to help the most.  As he changed, we were flexible enough to change the preparations to assist his needs.

Everybody is different.  One thing I noticed and found rather unexpected, was that Morphine worked the opposite than what we thought it would do.  We thought it would help with his pains and help him to relax.  It did help with pain, although I noticed a pattern with that as well.  His form was a liquid Morphine taken orally.  At first administration, he would become somewhat sleepy, so we found that, for him, taking it after a shower and lunch would allow for a nice little nap.  I noticed that after an hour or two, he would become restless in his sleep and literally wake up in a panic.  While he was at this period, he suddenly felt he needed 5 things all at once and at first, not seeing the pattern of his reaction to this drug, I would run around the room trying to satisfy his every need.  It took a little time to recognize this pattern and having something soothing for him when he awoke, such as a cup of tea, seemed to decrease this.  

I have also read that certain foods may increase the possibility of panic attacks.  Too much sugar or caffeine might bring them on more frequently.  

Much of this is written from a caregiver's standpoint, yet, there are many people with PF who experience this and do not have any assistance.  This can be very frightening.  It might be a good idea to visit with your doctor to discuss these attacks if they are too frequent, or preventing you from daily enjoyment.  My husband was not on an anti-depressant, although some people say that this has helped them a great deal. Having a phone near-by or discussing this with your friends or family may give you additional support.  Of course, learning to change your focus from what is causing the panic to something else would help, but is one of the hardest things to do.  

Here are some links that may provide further insight (I will put a question mark after each topic, because not all of these will be helpful to everyone, but, maybe there is one for you.)  Be sure to speak with your doctor regarding any questions you may have before starting medications or natural supplements.  

Meditation? 

Harvard Yoga Scientists Find Proof of Meditation Benefit - http://www.bloomberg.com/news/2013-11-22/harvard-yoga-scientists-find-proof-of-meditation-benefit.html

Tea?

Best Teas For Stress and Anxiety- http://www.doctoroz.com/article/best-teas-stress-and-anxiety

Points of Focus? 

How To Stop Panic Attacks- http://www.healthyplace.com/anxiety-panic/panic-disorder/how-to-stop-panic-attacks-and-prevent-panic-attacks/

Diet?  

9 Foods That Help or Hurt Anxiety- http://www.everydayhealth.com/anxiety-pictures/anxiety-foods-that-help-foods-that-hurt-0118.aspx

Pharmacy?  

Drug options for treating Anxiety/ Depression- http://www.webmd.com/anxiety-panic/

Herbal?

19 Natural Remedies for Anxiety- http://www.health.com/health/gallery/0,,20669377,00.html

Peer Support?  

Pulmonary Fibrosis Foundation Support Groups-  http://www.pulmonaryfibrosis.org/life-with-pf/support-groups

September Pulmonary Fibrosis Awareness ~My Wish

On this last day of September, having looked back at Pulmonary Fibrosis Awareness month, I can honestly say that this year seemed to be one of the most successful in spreading the word about this disease.  I have seen posts full of beautiful people with streaks of blue in their hair, listened to songs with blue in the title, watched touching videos of personal stories, read facts and blogs.  So many amazing people trying to do their part to let the world know how PF touched their lives; from patients themselves, to foundations, caregivers, friends and family members who lost someone to this disease.  

In trying to do my little part to contribute, I can say that it often is not the easy thing to do.  Can you imagine having this disease, yet posting and reading about the short life expectancy, or the terrible symptoms you may one day experience?  Or, as in myself, and many others that have lost a loved one, to relive the experience with every bit of research you do or the moment you tell your story to someone else?  It is not easy, but I see the strength of all of those who continue to advocate and I feel stronger, too.  

It is my wish that our collective stories have touched and informed some of those who have never heard of the disease.  That the general public becomes aware of Pulmonary Fibrosis and that one day, that awareness may lead to more funding for research and alternatives in medications, prevention, or a cure. 

What Would We Do Without Support?

I wonder where I would be without finding the support of someone who understands?  ~Breathing

Find your support group by clicking the link below.  

Support Groups / Pulmonary Fibrosis Foundation

Don't have one in your area?  Contact the Pulmonary Fibrosis Foundation and find out how to get started.  There are also many groups provided online.